Tuesday, September 27, 2011

Before Xrays

For your viewing pleasure; before xrays 

As you can see, I have what is called an "S" curve.  The thoracic (middle spine) measures 70 degrees and the lumbar (lower spine) measures 68 degrees.  The loss of 3" in height is a result of these two curves progressing.  I'm looking forward to the day when I will update this blog entry to include both, before and after, xrays!  :)


Mission accomplished!

I met with Dr. Lenke last week; he said he can help me and I am scheduled for surgery Aug 1, 2012. I'm on the cancellation list and feel good that the surgery date will be bumped up.  I was able to meet with two ladies from the Scoliosis Foundation forum who just so happened to have morning appointments with Dr. Lenke for their 1 year follow ups.  Talking with them really helped pass the time and it was very comforting.  Nancy, who is in her late 50's, had similar surgery and is fused to her sacrum.  It was good for me to see her because a lot of folks think there are major flexibility limitations when fused to the sacrum, but you'd never know Nancy had surgery at all just looking at her.  Total time in Lenke's office was 5 hours! I was told to expect 3 hour wait time when I scheduled my appointment last month.

Dr. Lenke said that I am very lucky my curves were right at his cut-off (70 degrees for new patients, he specializes in severe cases only) otherwise, he would have referred me to someone else. It is interesting to see his recommendations compared to the Atlanta surgeon. Dr. Lenke was very pleased that I am on Forteo and said that even though I just started Forteo 3 weeks ago, that will not impact my wait time for surgery. He said if my surgery date moves up, his will still operate regardless of how long I'm on Forteo.  The Atlanta surgeon measured me at T72* and L58*, Lenke measured me at T70* and L68*.

Lenke gave me a choice of surgeries: Option #1 fuse T4 - L4 (bottom of neck to bottom of lumbar area of spine) and have to come back for additional surgery to replace L5 within 2, 5 or 10 years (the L5 disc always wears out quickly in a full fusion from bearing the full weight of the spine). Option #2 fuse T4 - sacrum (bottom of neck down entire spine and anchored into my sacrum) and no need for future surgery. My response, "To the sacrum will be great... I don't want to have to come back, no offense." Dr. Lenke and his team all chuckled at that. Lenke explained most patients opt for the sacrum.  This link shows which vertebrae will be fused http://mississaugachiro.com/interactive_flash_spinal_nerve_chart.php

What does it mean to be fused to the sacrum?  I will be able to sit; however I will have limitation with not being able to bend over.  Squatting will be necessary to, let's say, pick up something from the floor.  Will I walk like the Tin Man?  No.  I could care less about some limitations because all of Lenke's patients I've talked with who are fused to the sacrum have said all their pain is gone, that they occasionally experience muscle tightness.  I'm still conservative with my pain goals.  Do I expect to be pain free?  No, but I am praying that some pain will be alleviated and anything beyond that is gravy.

Dr. Lenke will do the following procedures in one surgery:
1.  T4 - sacrum fusion: Implanting two titanium rods and multiple screws along both sides of spine.  Here is a little video showing how a fusion is done (animated, no gorey stuff) http://www.youtube.com/watch?v=OfWQr_2yF9g&feature=player_embedded   

2.  TLIF (Transforaminal Lumbar Interbody Fusion): an anterior surgery from a posterior approach so no need for a second anterior surgery as the Atlanta surgeon recommended. Dr. Lenke pioneered this approach and teaches surgeons how to do this procedure.  This is where he will anchor the bottom of the fusion into the sacrum.

3.  Perform about 5 to 8 Smith-Peterson osteotomies: there are 3 levels of osteotomies and I need the "easiest" level I.  Osteotomies are removal of bone from the vertebrae which cause a lot of blood loss; however, this creates new bone growth for a stronger fusion.

4.  Implant 2 cages at L5 with BMP:  Cages are little metal devices that provide a stable platform for the weak L5 disk.  One cage will be placed above and one below L5.  BMP (bone morphogentic protein to build a stronger fusion) is a material that gives a 23% stronger, faster fusion and Dr. Lenke won't do any surgery without (think of it as super glue).  BMP comes in a kit and each kit costs between $10k - $12k.  Lenke said I will need 6 kits.  Most insurance companies deny BMP because of the cost.  Washington University Barnes Jewish Hospital has been absorbing the cost for patients; this is where I'll have surgery.  The hospital and Dr. Lenke feel that the benefits of BMP keep patients from having future fusion issues and result in faster recovery.

These surgeries are incredibly expensive and average around $250k.  I'm looking forward to taking advantage of our health insurance policy. :)  Dr. Lenke only does 30 adult scoliosis surgeries per year.  He also leads the pediatric spinal department at Shriners Children Hospital in St. Louis.  He is definitely a busy man which is why I have peace knowing the best-of-the-best will be doing my surgery.

Lenke estimates the surgery to last 6 - 8 hours (the Atlanta surgeon suggested 8 - 10 hours for posterior surgery and a 4 - 5 anterior surgery 3 months later). On Lenke's scale of difficulty 1 - 10, he ranked me at 1.5 (1 being the least challenging, 10 being the most challenging). The Atlanta surgeon told me she ranked me as a 6 on her scale. The Atlanta surgeon turned out to be a bit more conservative for my needs and there is nothing wrong with that because it has ultimately led me to Lenke's care.

Lenke expects to get a 70% - 75% correction! I simply cannot fathom that and will be over the moon when it happens.  It's hard for me to comprehend any correction since I've been crooked for so long.  Lenke said 80% of his patients have significant pain reduction post-op, 12% maintain current pain levels and 8% actually have worse pain.  I'll spend about a week in the hospital and Lenke suggested I stay in the adjoining hotel for a few days before heading home.  I will be up and walking the day after surgery - amazing!  Full recovery will take 1 - 2 years.

I'm well aware there are risks with any procedure.  I explained to Lenke my goals are to stop the progression and hopefully alleviate some of my pain.  Here is Lenke's website, the Patient Stories tab has some amazing journeys http://www.spinal-deformity-surgeon.com/

I am VERY relieved that I have a plan in place with Lenke.  God is good.  Thank you so very much for praying not only for me, Jeremy and Lizzie, but for Dr. Lenke and his team.  God is creating miracles through Lenke's hands.


Monday, September 19, 2011

The Big Day

I'll be meeting Dr. Lenke in St. Louis this week.  Excited and anxious.  Praying that Dr. Lenke will be able to help me and schedules a surgery date (sooner than later).  Not knowing when surgery will be scheduled has been driving me nuts.  Wooooosaaaaah....


Monday, September 12, 2011

Hmmm, That's An Odd Sensation

The Forteo injections are good; today is injection #13.  Only 717 injections to go!  :)  Yesterday, I experienced one of the common side effects, pain in my thighs.  Have you ever had the flu and your body ached from deep within?  That's how this pain feels.  I spent a good part of the day yesterday in bed because sitting is painful.  This laying around stuff is for the birds.  My thighs are achy this morning and I decided that I'm not going to lay around and accept the pain.  Lizzie and I went for a short walk through the neighborhood after I worked out this morning.  Lizzie-Girl (one of our dogs) layed on my towel next to me while I did my exercises and yoga.  It was very sweet to have her company.  It is a beautiful cool and sunny morning.  I'm looking forward to the fall season.  It will soon be applesauce making time.  :)

Lizzie and Jeremy have been very helpful with my growing need for help.  This experience has humbled me as I'm not used to asking for help.  We have a new routine every night since I started taking Forteo.  At 9pm I get settled into bed and either Jeremy or Lizzie bring up the Forteo pen (which needs to be refrigerated) to me, I do my thing, and they bring it back downstairs and put back into frig. I've heard patients say they are able to avoid dizziness/nausea by doing the shot in bed at night.

Last night, I'm in bed, have my little needle and alcohol swabs ready, I'm in my jammies waiting patiently. I don't hear anyone coming. I wait a little longer, little longer... how could they forget me?  ;)  So I walk toward Lizzie's study and Jeremy's office which happen to be upstairs, just down the hall. I'm standing in the hall; look to my left and see Jeremy and look to my right and see Lizzie. I quietly asked, "Can someone bring me Forteo? Anyone? Anyone?" Lizzie laughs, "Mom, you are too cute!" She ran downstairs and brought it up.

It's really sweet how Lizzie wants to help with the injections and has learned how to do everything in the preparation of the shot except the actual injection (I prefer to do that myself). She does the swabbing of the Forteo pen tip and my injection site, attaches the needle, loads the medicine, removes needle caps (I inject and replace needle cap), then she removes capped needle and places in bio-hazard container.

I look forward to being "on the other side."  This is what patients refer to as being post-op.


Tuesday, September 6, 2011

The Forteo Phase

I had a great meeting with the endocrinologist.  He explained that mega doses of vitamins won't build bone and that there is only so much the body can absorb before the excess is passed as waste.  The endo prescribed Forteo since there is an urgency to get surgery because both sides of ribs are now compressing into lungs and pelvis.  My insurance approved the prescription and the Forteo phase has begun: daily injections for 2 years.  I started injections last week and have not experienced any side effects.

Eli Lilly, the manufacturer of Foreo, is wrapping up their 10 year study on Forteo.   Perhaps they will decide it is safe enough for people to cycle back on to it.  The endo explained that vitamins will not maintain the new bone grown by Forteo and that I'll need to go on a maintenance drug.  Reclast or Prolia are commonly prescribed; however, I'm learning Reclast has some nasty side effects (death).  

Thanks for reading,